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Speaking Up: The Power of Patient Advocacy

After Valerie Ann DeMathews died of cancer at age 65 in October 2014, a written tribute stated that she was known for her “love of people, indomitable spirit and forthright courage.”

None who knew her would dispute that summation.

Even amid her horrific battle with a rare and aggressive malignancy called leiomyosarcoma, Valerie, who was treated at both the Cleveland Clinic and The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James), looked out for others through tenacious and successful patient advocacy efforts that will have lasting benefit.

Leiomyosarcoma is an incurable form of soft-tissue sarcoma that arises in smooth muscle cells and can spread throughout the body. For Valerie, this malignancy was first detected in 2004 during a hysterectomy in which doctors found a suspicious mass that they sent to a lab for testing.

A few years later, when the disease recurred in her lung, she opted for treatment at the Cleveland Clinic, which offered what was then a cutting-edge, state-of-the-art approach to non-operative management of isolated lung tumors called stereotactic body radiation therapy (SBRT).

Gregory Videtic, MD, section head for thoracic malignancies in the Department of Radiation Oncology at the Clinic, who had led the development of its SBRT program, first met Valerie in July 2010 and was involved in her care for the next five years. He saw her routinely at least every three months, and whenever she required another session of SBRT to deal with a new lung tumor, the process went smoothly.

Dr. Videtic recalls that, many times during her visits to the Clinic for SBRT, Valerie wondered aloud why those advanced technologies were not available at Ohio State. Valerie, who lived in Columbus and had been treated at the OSUCCC – James for unrelated breast cancer, told him she was out to change that.

Valerie’s brothers, David and Michael DeMathews, remember that, almost as soon as she started going to Cleveland for treatment, Valerie began talking to OSUCCC Director and James CEO Michael A. Caligiuri, MD, and OSU Department of Radiation Oncology Chair Arnab Chakravarti, MD, about the need to offer these treatments at the OSUCCC – James.

“She always cared about others’ welfare more than her own, and she thought the acquisition of this technology at The James would be helpful to future patients,” said David, noting that his sister parlayed her educational and business skills into her patient advocacy.

Years earlier, Valerie had earned a bachelor’s degree in education from Bowling Green State University, but instead of teaching she embarked on a business career that would include a succession of work experiences: managing multiple large clothing stores in Columbus, working in real estate development, serving as an assistant in the Office of the Ohio Treasurer, and becoming an area manager for a telecommunications company before her illness forced her early retirement in 2009. She offered business-development consulting services through her own company almost until her death.

Her brothers say Valerie applied to her advocacy endeavors what she learned in the business world about staying laser-focused on a goal and reaching it at all costs.

“Her goal was to help find the best avenues of treating leiomyosarcoma by providing world-class doctors at The James with the best available equipment so that others wouldn’t have to go through what she did,” her brothers said.

Dr. Chakravarti, who holds the Max Morehouse Chair of Cancer Research at Ohio State and is a member of the Translational Therapeutics Program at the OSUCCC – James, describes IMRT and SBRT as “techniques that allow us to precisely treat tumors while sparing normal surrounding tissue from the harmful effects of radiation. In many ways, they represent the consummate ‘targeted therapies’ in radiation oncology.”

Dr. Chakravarti says he heard from Valerie DeMathews, whom he considers “one of the most remarkable patients that I have ever encountered,” soon after he joined Ohio State’s medical faculty as chair of the Radiation Oncology Department in 2009.

“She met with me early during my tenure here and mentioned that she sought treatment at the Cleveland Clinic as Ohio State lacked IMRT and SBRT,” Dr. Chakravarti says. ”That opened my eyes that we could dramatically improve the lives of many cancer patients by acquiring these technologies.”

He says Valerie’s dream was for the OSUCCC – James “to offer IMRT and SBRT to all Ohio State cancer patients, and her dreams were fulfilled in part when we acquired the Varian Truebeam platform.”

Varian Medical Systems describes the Truebeam™ Radiotherapy System as a fully integrated mechanism for image-guided radiotherapy and radiosurgery. TrueBeam can treat malignancies anywhere in the body where radiation therapy is needed, including lung, breast, prostate, and head and neck cancers.

Dr. Chakravarti says Valerie “also desired the acquisition of proton therapy, which is one of our future goals. Her sense of urgency on these fronts served as a catalyst from the patient advocacy perspective.”

Although Valerie was never treated with the new equipment at the OSUCCC – James, she received other treatment at Ohio State during her cancer journey, including surgery, chemotherapy and radiation.

To Dr. Chakravarti, Valerie is unforgettable.

“No one would ever guess by looking at Valerie that she was battling a life-threatening disease,” he says. “She was always full of energy, enthusiasm and eternal optimism. Cancer could not take this away from her. In my mind and from this perspective, she beat her cancer.”

Lauding their sister’s persistence, the DeMathews brothers say Valerie was very happy to learn that the hospital would acquire IMRT and SBRT.

“It was all about one person having the intestinal fortitude to stay on point and battle for something—to help reach a goal that ultimately benefits everyone,” David said, adding that Michael and he commend the faculty and staff at the OSUCCC – James for the care they provide and for their willingness to keep patients foremost in mind.

“Everyone at Ohio State who was involved with Valerie’s care demonstrated professional excellence and devotion to doing what’s best for the people they serve,” David said.

Dr. Caligiuri fondly remembers Valerie, whom he considered a friend.

"What I loved about Valerie was her warm, constant smile and the sparkle in her eyes, which reflected an inner belief that anything was possible,” he says. “She always had a kind and gracious way about her. She was an inspiration to all of us in the way she handled her disease, and in the way she supported James patients afflicted with cancer and all of the challenges that come with it. I will always be grateful for Valerie's presence in my life.”